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25 February 2013

What an experience! Liam did fabulous through the whole experience. I still sit back amazed at how it all came together and how I got to watch such a miraculous event take place. I still get chills thinking about watching those stem cells being infused into his brain.

I forgot to mention that Liam got an infusion in his IV as well. Apparently stem cells are different sizes and only the smaller ones can be infused to the brain. The leftover stem cells that are too large are not to be wasted so Liam got two IV drip bags full of those stem cells as well.

He only has minimal bruising now, turning green, and is healing very nicely. You'd never notice the pin prick from where the extraction was.

Bruising and scab from the needle for the extraction.

Beside his birth mark is a teeny incision from the catheter and bruising around.

The staff and doctors there were top notch. Dr. Anthony was amazing and very attentive. After the infusion he sat in the room with us for 2 hours until Liam calmed down. We talked about God, missions, youth of today and where his passions are. He is a devoted dad fighting for all special kids to get better.

He gave me a list of supplements to put Liam on right away.

HGH

Piracetam

DMG

Hydergine

All supplements to help with brain function.

The Dominican is a "Third World" country but is miles ahead of the USA in regards to it's use of stem cells. We are so blessed to have been able to go.

Flying home I came across this article in Delta Sky Magazine. While not the exact same thing we did, it's the same idea. Using stem cells to heal.

Coincidence, eh?

After wrapping things up with Dr. A. he told me to take Liam for HBOT as soon as we got home. I was thrown for a loop on that one because I thought we were done with 'treatments'. He said, "It's a must." I told him about the sequestration thing going on and how we were going to be losing a lot of my husbands pay next week and that we were all out of money to do anything else. He said to do at least 20 dives if we couldn't do 40. It's the 1-2 punch, he says. The stem cells wrap around those injured areas and cause new connections to be made and the HBOT opens them up to start working.

Please be in prayer for us over this. I have to leave my family for 3 1/2 weeks. It's expensive and of course, insurance nor medicaid covers it. I did talk to the place we went before and he told me he'd give me a cheaper price when I explained our situation and that we were just coming back from stem cells, but it will still be over $4000 to do this (housing and charges). I had no idea about how important it was to do HBOT afterwards and just feel all out of sorts over this unexpected blip in the journey. I was looking forward to getting heavily into therapies for Liam and taking advantage of the few sessions he has left before school gets out. He doesn't get services in the summer.

Whatever happens, everyone knows we witnessed a miracle in Liam getting stem cells. God truly provided in every sense of the word, from the financial aspect to the spiritual, to the emotional to the physical....He had his hands all over this. We are so very grateful to our prayer warriors and would ask for continued prayer for healing and success for Liam. The next 8 months are when we expect to see some amazing things.

22 February 2013

Im typing this from the ipad so if it looks junky, that's why! It apparently doesn't keep the paragraph form once it posts. >:( I wanted to try to fill in the details of yesterday while they are fresh in my mind.
We got to the hospital at about 2:00 local time. After meeting Dr. anthony we we taken upstairs to the fourth floor. We got a really nice room (pictures later cuz I have no way to post them on the ipad) and waiting for them to finish prepping the surgery room. We took Liam to the fifth floor a short time later. I walked with him all the way to the surgery room. We wrapped him in a surgical gown, little booties, and a hat. Which he promptly flung off. Then they took him away.
Dr. anthony prayed over Liam and the Drs and the procedure and then we headed back to our room on the fourth floor to wait. I was confused on how the schedule would go because of what I had read. I assumed we would see Liam after they extracted the stem cells while they waited for them to be processed. We didnt. They kept Liam and the processing was significantly shorter than I thought. Dr. anthony came in about two hours later telling me to hurry because I could watch them infuse the cells! We all hurried down the hall (liam was now on our fourth floor) and we walked into this surgical cath lab with big glass windows. Liam was asleep on the table (anesthesia was propofol) and the cardiac interventionist (I think thats what he said he was) was snaking the cath up his carotid on his right side. We watched as the stem cells were released and pulsed through, lighting up his brain. Then he pulled the cath down, went up his left side and released some more. They were at least 4 60cc syringes used for infusing in his brain. They had a container sitting on the table full of Liams stem cells. He sucked them all up until they were gone. The Dr. Showed me the angio-seal used to seal off his artery and then it was done! I couldnt believe how quick it all went. We were expecting hours. Liam was waking up as he was putting in the angio-seal.
They do not give any pain meds following the procedure. I dont know if Liam was in pain but he was pissed to be sure. He cried for two hours non-stop. When he gets that mad he snorts and that makes him madder because it hurts him. So the vicious cycle lasted until we got in the van to come back to the hotel.
He would not sleep on his back lasst night....would only sleep on his side curled up with me. They hydrated him well, I had to change his diaper 4 times since the procedure.
The center where this is done is excellent. Liam had a top notch anesthesiologist who is also a critical care interventionist in the ER. He had a plastic surgeon remove the stem cells and the cardiac interventionist who did the cath is supposed to be one the most highly trained in the world. They have an excellent team here caring for these kids.
This center will be going globsl with a news announcement shortly and they expect to get flooded with patients. Im so thankful for what they do here. This procedure cost a fraction of the price it would cost in the US, if they even did it...which they dont. Dr. Anthony has watched stem cells cure alzheimers, lupus, autism, and more.
When he prayed over Liam he prayed for "the life blood, the marrow of Liam to heal him because life is in the blood. And jesus gave his blood so that we might have life, let the blood heal"
My bestie asked me if yesterday felt like Christmas Eve to me because it felt like it to her. I said it didnt because the momma bear side had kicked in when I got to the hospital and my thoughts were for only in that moment and prayer time kicked in. But i can Tell you that i woke up today feeling like it was Christmas. We have torn through the roof and laid Liam at Jesus feet believing in miracles to come. And i cant wait to watch liam open them.

21 February 2013

We started out very early yesterday morning to catch our 6 am flight. I had Liam sleep in his clothes so all we had to do was put him in his car seat and go. But little wild man woke right up and stayed awake. We had to get patted down and swiped for explosives because I didn't want then to open Liam's formula and I didn't want him to go through xray. In order for me to get patted down they had to call for approval to do it. By the time they got finished we were the last ones to board the plane. I carried Liam and Rylie carried the seat. She only hit one or two people before a lady showed her how to carry it down the aisle. ;) Rylie sat in front of us, next to a very chatty woman who's husband was a harrier pilot, yet she hated flying. I think having Rylie next to her helped her a lot.
Liam did great on the flight. I left his stomach empty so there would be no emotional vomiting from being in a different car seat and not in his car. But he did so good. He loved take off.
In Atlanta the Delta boarding dude let me get on first. As I walked by he told me to tell the flight attendants 1b. I did which got us in first class. I was super excited and was finishing up getting Liam situated when a lady come on the plane and said I was in her seat. :( There was a lot of confusion at that point on everyones part and we ended up back in where we originally were. They apologized a lot and gave us first class pillows and blankets and water.
Liam did pretty good on this flight too. He fell asleep for about 15 minutes and only fussed for the last 30 minutes when I couldn't get him out. He was done with being in the car seat.
When we got off the plane we had to be taken to the immigration area seperate from everyone else because of the stroller. A guy silently put us on the elevator and sent us off. We were a bit confused when we got off the elevator but found the immigration sign and started to stand in line. Aother guy came up to me and spoke Spanish motioning for me to go around the long line. I wasnt sure what he meant, the line was really long, but when I walked around to the side the lady took me right away. What a blessing that was to not have to stand in that long line! We paid for our tourists passes, checked through immigration, and exited to find Dr. Anthony's daughter Rose there to greet us. Another family had come in right before us so we all rode together for the 45 minute drive to the resort.
This family has been here before so I was able to talk to her about a lot of the smaller details. It's really comforting to be here at the same time as others. They are doing a different procedure though.
Our resort is very nice. We didn't explore though after getting here. Liam just wanted to lay down and play so we ordered room service and got the biggest burgers I've ever seen and relaxed the rest of the night.
We will get taken to the hospital sometime around 1 and we will be there for the rest of the day and long into the night. It's going to be a long day with no food for Liam. He'll be hydrated through iv and this evening is when the catheterization will take place for the dispersal of the stem cells.
Praying Phillipians 4:6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
And Joshua 1:9 have I not commanded you, be strong and courageous. Do not fear or be dismayed. The lord you God will go with you wherever you go.
Thank you to everyone who has prayed and continues to pray us through this. I remember you in my prayers and am so grateful for you.
I will be grateful to get this day behind us!

14 February 2013

I had heard the large convertible car seats are hard to fit in airplane seats and with their heavy weight they are hard to carry in and out of the plane and to get down the narrow aisles. Well, that's what we use for Liam, the large Britax Roundabout. I thought I'd try to find what experienced travelers use for their toddlers so I googled, "best car seat for traveling with a toddler on an airplane" (yes, I googled every word). And since I'm traveling alone with Liam I would like e.a.s.y. if at all possible.

Up popped a message board that listed the Cosco Scenera. It could be found at Wal-Mart. For only $39. Say whaaat? They said it was lightweight, narrower, and easier to use than the more expensive Britax models. And it was only $39! I checked it out at walmart.com, picked a cute polka dotted color, and had it shipped to my house for .97 cents. I honestly figured it probably wouldn't work with Liam and his tone and I would just return it. So, imagine my surprise that it worked. It really, really worked! Liam could sit in it just fine and he really seemed to like it.

But would it work with Liam's Ottobock Kimba stroller base? We had planned to strap the Britax to the base by taking the plastic bottom off the Kimba seat, securing it onto the base and then using the tether over the handle to strap the Britax onto it. Not too difficult but with the cumbersome size and the tether, it wasn't as easy as I would have hoped because I will have to be telling the airline attendant how to do it because I will be holding Liam. Or she can hold Liam and I can put on the seat. Either way- not ideal with the Britax.

Imagine my surprise (again) when Shawn put the Cosco seat on the frame of the Kimba and it fit so nice and snug that it looked like it was molded just for this frame!!

But wait.

It gets better.

Shawn was rigging it up with the tether over the handle like the Britax had been. But it wasn't as perfect as he would like. It was decent I could push Liam around in it and it felt pretty solid, but it wasn't ideal. Shawn and I sat on the floor and started looking at the seat and the base trying to think about how to make the seat just a bit more secure (cuz I will have to haul hiney through the airports seein's how I am the last one off and my layovers are short) when what to my wondering eyes appear? I spy something green underneath the padding, where Liam's sweet checks are currently sitting and I pull it out. Imagine my surprise- no really, seriously- I am so freakin' surprised to see that it is an additional tether strap! But what is so cool about this little strap is that it is attached to the back of the car seat in a T shape with two latches on each end. These latches fit perfect to the side of the stroller frame. Like it was made for it. I kid you not! We just sat there in shock.

What a relief for me to be able to take a light weight car seat! It will be so much easier for me to get him strapped in and out of this one on the plane. It will be easier for an attendant to carry it off for me and easier for them to put on the base because all they literally have to do is set it on there. Or I might even be able to carry Liam off the plane while still sitting in the seat which would be the best.

I'm so thankful for a God that is involved in even the smallest of the details.

06 February 2013

Two weeks from now Liam and I will be sleeping in our hotel room in the Dominican Republic resting up for his procedure the next afternoon.

I'm trying not to over think things because that will get me mentally in trouble. I will be traveling alone with Liam and obviously if I could be traveling with someone else, that would be the best option, to have the extra hands.

Liam does not like his car seat in anything other than our suburban. We have put him in Rylie's car and he threw a fit the entire drive across town, took forever to calm down once he got out, then started crying again when he say the door open knowing he had to get back in. We also tried a friends jeep thinking the open top would be fun and would take his mind off of him not being in his car. He cried all the way to the beach and back.

Our flight is at 6 am so that has us leaving our house at 5 am (luckily we are 5 min. from the airport). I'm not happy about that myself and that will be really hard on Liam as well. So he's going to be starting off really bad that morning.

The day of traveling isn't terrible, but it will be long for Liam. He will have to be in his car seat for much of it and it isn't his favorite place even when it's in our vehicle.

As you all know, Liam has no head control. What he wants is to have his head up on it's shoulders the way it should be. He continually tries to put his head upright from the reclined position he is in in his car seat or stroller, but then when he gets it upright it falls down and he can not pick it back up. He also gets very excited around lots of people and when he gets excited he has even less control of no control, if that makes any sense. What that means for us is that while walking through the airport, pulling my carry on and pushing a stroller with my free hand, I will continually be stopping and picking his head back up for him until he can calm down and relax. We will have one layover going down and two coming home.

Once we get to the DR we will be taking an hour taxi drive to our hotel which means another location, strange to Liam, that will give him anxiety.

We will land at 2:30 DR time but allowing in the time to get through customs and out of the airport, the taxi drive, and checking in at our hotel, I expect we won't be able to relax until 5. That's a 12 hour travel day for Liam which is asking a lot out of him. He's a very easy going kid so I have high hopes but know that it will still be rough for him.

If you can, please think of us February 20th and say a few prayers that it all goes better than I could have hoped.

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This blog has journaled the fallout of giving birth to a micropreemie & how it's affected everything in our life from marriage & family, to friends & church & beyond. Liam's early arrival gave him a list of diagnoses like CP, CVI, & ROP. His most impacting special needs are his mixed tone ataxic/athetoid-like cerebral palsy & vision issues. He's non-verbal but teaches us all. Follow along as we try to live this crazy normal, knowing God is the author and he isn't finished writing this story.